“Tolerating” medication

This post is about the word “tolerate” in relation to medication for mental illness.

Some of the side effects I experienced from clomipramine:

  • dry mouth – to the extent I couldn’t eat certain foods, had to drink throughout meals and a lot more than usual the rest of the time, had trouble making conversation over dinner and when walking, and was beginning to get sores in my mouth. I used chewing gum if I was going to be talking for a while.
  • tiredness – to the extent that I had to have a nap every day as well as sleeping through the night.
  • light-headedness/dizziness – this was typically when I stood up, but it also seemed to come in after a while of being awake: I could only read for a certain amount of time before reading made me feel sort of light-headed/slightly nauseous and I had to go to sleep to fix it.
  • travel sickness – I got this when taking the bus and sometimes in cars when I wasn’t driving. Chewing gum helped a bit.

On top of all this there was no evidence that it was helping me at all – there was no change in OCD and I’ve realised in hindsight that I was also becoming gradually depressed – this was probably because I wasn’t taking sertraline anymore, and the clomipramine wasn’t having any anti-depressant effect.

I chose to reduce (and eventually stop) clomipramine because I have to drive for five or six hours every couple of weeks, and I didn’t feel that it was safe to do so with some of the symptoms I was experiencing.

The psychiatrist was understanding and said that she wouldn’t want to take clomipramine herself, but she also used the language of “not tolerating” clomipramine. This made me feel a bit hurt – I put up with those difficult side effects for a couple of months without seeing any improvement in my mental health. Even then I was only able to do so because I have a flexible job and an understanding boss – having to nap every day would interfere with most jobs.

I suspect that the psychiatrist and I understand the word “tolerate” in different ways. I looked up a definition which said that tolerate means to “be capable of continued subjection to (a drug, toxin, or environmental condition) without adverse reaction.” To me, tolerating something is mainly based on willpower, but it seems in the medical understanding that’s not necessarily the case.

It’s probably important that clinicians and patients are aware that they might not be on the same page when language like “tolerate” is used.

What’s happened in my brain?

Over the past couple of months I’ve had three sets of symptoms: intense intrusive thoughts/fears about death, depressive symptoms, and my usual religious OCD obsessions and compulsions.

I know how to handle my usual OCD, and to some extent I am familiar with intrusive thoughts, as my OCD took this form when I was a teenager. But I don’t know how to handle depression. I feel frustrated because people’s advice for how to deal with it is to talk to people, have therapy and so on. But I already do this – all through this period I’ve talked to my loved ones and increased the frequency of my therapy sessions. I’m also quite good with being kind to myself – a side effect of 10 years of therapy for OCD is that I learned how to reduce self-criticism and increase self-care. So why am I depressed? The most likely answer is brain chemistry.

There is some debate in popular culture about how useful antidepressants are, and whether they are doing what we think they are doing. But to look at it from a neuroscientific perspective, the generally accepted thinking is as follows: neurons communicate with each other across gaps called synapses. This communication is done by neurotransmitters. These are released from neuron 1, travel across the synapse, and are taken up by neuron 2. Any neurotransmitters that are left floating in the synapse are taken back by neuron 1. One of these neurotransmitters is serotonin. It’s theorised that a feature of some mental health conditions is that neuron 1 is too keen to take the serotonin back. This means that neuron 2 doesn’t manage to get enough of the serotonin. So the way SSRIs are thought to work is that they keep the serotonin in the synapse for longer. This gives neuron 2 a better chance to pick the serotonin up.

My best guess for what happened, based on my own knowledge and discussion with my psychiatrist, is that after 7 years of the SSRI sertraline, my brain got used to dealing with sertraline-enhanced levels of serotonin. When that sertraline was taken away, my brain didn’t immediately spring back to “healthy” use of serotonin. Instead it ended up with depression-like levels of serotonin transmission, which in turn led to depression symptoms.

Depression over the past few days

The last few days have been a little easier in terms of depression symptoms. I don’t think I’ve cried in the last few days – prior to that I was crying every day. Crying every day was strange for me – even before I started antidepressants this wasn’t something I had experienced. When I was having a hard time with life events I would cry quite a lot, but that was in response to what was happening – this recent crying could be triggered by anything and was linked to my general mental state rather than external circumstances.

The change seemed to come when I got a good night’s sleep. Before that I’d been having trouble sleeping, and was only sleeping for short periods at a time. I think my new SSRI (fluvoxamine) might be starting to work as well. I got up to 150mg on 10th October, and 200mg on 15th October. I’m continuing up until I get to the maximum of 300mg. This is because you have to be on high doses of antidepressants when treating OCD. But to be honest at the moment I want it to reduce the symptoms of depression, reduction in OCD symptoms would be a bonus.

In contrast to the experience with clomipramine I haven’t had any obvious side effects from fluvoxamine. The difficulty sleeping might have been related, and I also had some headaches (although that might have been due to lack of sleep).

Getting from three to two

As I said above, I’m used to coping with OCD; I’m not used to coping with depression as well. Since the depression has lifted slightly I’ve had a little spark of hope that I can deal with the intrusive thoughts – they are scary but they are something I’ve dealt with before, and I have strategies for how to approach them. I’m leaning on my new SSRI to help with the depression – if it doesn’t then I hope I can go back to sertraline and that will help with the depression instead.

Having all three of the symptoms I mentioned above has been horrible and incredibly difficult to cope with. The past few days have been a bit easier, I’m hoping this sticks. Sleep seems to be important so I’m trying to prioritise that.

Depression

Last week (4th October) I had an appointment with my psychiatrist, the first chance I’d had to see her since I got very ill at the beginning of September. I told her about how much I’ve been struggling – the constant intrusive fear, feelings of terror, and frequent periods of crying. I keep feeling that I can’t cope and I’m finding it very difficult to keep pushing on each day. I haven’t felt this bad for this long in at least a decade.

We discussed the fact that since I came off sertraline at the end of June I haven’t been on a high dose of an antidepressant. I did get up to 200mg of clomipramine but only stayed on that dose for a week as it was causing light headedness and I didn’t think it would be safe to drive for long periods of time.

It turns out that taking away a high dose of antidepressants seems to have resulted in my brain getting depressed. Although it sounds kind of obvious when you think about it, I (and presumably my psychiatrist) hadn’t anticipated that this might happen – to the extent that I’ve had depression in the past it’s generally been in response to trying to cope with OCD, rather than as a condition in its own right. (I was coping with severe OCD whilst I was on sertraline, but I wasn’t depressed).

The psychiatrist told me that 2 months is a typical length of time to relapse with depression after stopping antidepressants. She also told me that the fact I’ve been feeling worse earlier in the day than in the evening could be a symptom of depression know as diurnal mood variation.

Right now I’m fed up and desperate for this to stop. But when I spoke to the psychiatrist I did feel hopeful – she seemed fairly sure that the horrible time I’ve been having has its roots in brain chemistry. That suggests we can put it right by improving the brain chemistry.

Risk something new or go back to coping?

You have to build up antidepressants slowly, and it takes time for them to work. So I’ve had to choose whether to go for a new SSRI which might help my OCD, or whether to go straight back to sertraline, which wasn’t helping my OCD but which I now know seemed to be keeping me “ok” in terms of not feeling “wrong” in my head all the time/having depression.

Someone recommended fluvoxamine, an SSRI I haven’t tried before – they had found it very helpful for their OCD. So I’ve decided to go for fluvoxamine. It’ll take about a month to build it up to a high dose, and I’ll have to wait another month or so after that to see if it helps my OCD. If it doesn’t then I will have to come off fluvoxamine and build up sertraline again. I don’t want to live like this for another 2+ months. But I feel like I should keep fighting and try the fluvoxamine in the hope that it could help with my OCD. If I went straight back to sertraline I could be fairly confident it’d reduce this new form of persistent suffering, but I’d be in the same place OCD wise.

I’ve just taken my 4th dose of 100mg fluvoxamine. I can go up to 150mg in a couple of days. So far I haven’t noticed any change mental health wise, though I’ve been having a lot of trouble with insomnia. Insomnia is quite common for me but this has been particularly bad – the past couple of days I’ve spent about 4 hours trying to get to sleep. I know serotonin (which SSRIs work on) is connected to sleep, so I’m hoping that the extra insomnia is a sign of something happening serotonin wise, even if it’s not a good thing yet.

Writing this blog helps me feel a bit more like me, so I’ll probably be updating more regularly over the next few weeks as I try to carry myself through each day. Thank you for reading!

Dragging myself back

My previous post discussed the sudden relapse (“relapse” in the sense of going from bad to worse, not from well to ill) that I encountered at the beginning of September. I thought I’d write a post to update you on how it’s been going since then.

I haven’t been myself during the past month. I’ve had to cancel plans because I’m too ill, something that I haven’t really had to do in years. I’ve cried most days – at times crying on and off throughout the day. Partly that was because being very sad was easier to handle than being terrified – to an extent crying provided a bit of relief from the fear. But I also cried at things the usual me would find faintly ridiculous – I visited a zoo nearby and kept crying because I’d been there with my partner when we were first dating. I watched a programme about guide dogs and cried at everything that happened – happy or sad. Today I’ve been crying because pushing on through OCD is so hard and I just wish I could be well.

One of the things I discussed with my therapist soon after I got suddenly very ill was that the last time I had a period of intrusive thoughts on this kind of theme (doubt and existential fear), it lasted for a year or two. It happened when I was about 15 and I remember it as a very bleak time. I was determined not to go through another year of it. The past few weeks have been so intensely hard to manage that I feel there is nothing I can do but very actively seek out strategies to get me through it. I’ve been devouring information and books that might help.

A few things have stood out in my attempts to get back to my normal state of being (I’m trying to get back to where I was in August – nowhere near well but not suffering like I have been lately). The first thing is my mum’s wisdom. She came to stay with me a couple of weeks ago and we enjoyed being together even though I kept crying and felt very frightened most of the time. I talked to her about the content of my constant intrusive thoughts and fear (focused on death and religion), and she listened and provided her thoughts. But after a while, she realised I was doing what I spent so many years doing in the past – asking the same questions repeatedly. She’d give an answer, I’d take it in, and then an hour later I’d ask a similar thing again. This is classic OCD, and my mum realised that.

Genuine questions respond to genuine answers. OCD doesn’t. It’s a constant cycle of “OK, but what if…”. My mum and I worked out that whilst I’m in this severe patch of OCD, my brain simply can’t take answers on board (as seen in recent neuroscience research on ‘safety signals’). Even if I were to come up with a true revelation on the meaning of life, so long as my brain was in OCD-mode, I wouldn’t be able to believe it! Therefore the only way to answer these constant doubts is to get well. If I have genuine questions/doubts when I’m well, I can use my well brain to respond to them. The way I got well last time was by not engaging with the questions. Therefore, if I genuinely want to get to the answer, I have to ignore the question.

The second thing that has really helped me in this period is what I’ve learned with the help of this website: http://www.accounseling.org/coping-statements-for-christians-with-ocd-scrupulosity/ My brain is desperately seeking certainty – OCD tells me if I can just find that one answer that sticks, I’ll be ok. But the nature of OCD means my brain can’t feel certainty at the moment. So instead of reaching for that certainty, I have been trying to redirect myself to doing the most loving thing I can do in the moment. Sometimes that’s doing my work, sometimes it’s walking my dog – it doesn’t have to be major. This is a way to live my beliefs even though I can’t feel my beliefs. I have to move forward through the uncertainty, not try to solve it.

I realise that talking about love in this way may sound dramatic or excessively grand. But the reason I am doing so is that love is the only concept bigger and stronger than the depths of this relapse. I think this will make sense to other people suffering with serious mental illness. Talinda Bennington, who lost her husband Chester to suicide, talks about moving forward in love – moving through the grief instead of becoming stuck in the despair. I’m using love in a broad sense – having compassion for others, choosing to be kind when it’s easier not to be, spending time with friends and loved ones.

The intrusive fears were almost constant when this relapse began – I wrote down a tally of each instance and it was more than one per minute. Now they are less frequent – I had about 10 when listening to an hour-long lecture the other day. I have got better at holding them off and redirecting my attention. I have periods of feeling ok, and these periods are getting longer. I’m still working at it very hard, but people close to me tell me I have improved a lot from where I was. I suspect this post may be more ramble-y than usual, but I hope it gives a good idea of what this is like. I’m quietly hopeful that I will be able to read this again in months or years to come and feel grateful that I got through it.

Clomipramine and relapses

Hello again after a while away from this blog. The main reason for my absence has been tiredness. I started taking clomipramine at the beginning of July, after 7 years of taking sertraline. I moved up through the doses, eventually going through 150mg and then 200mg. On these doses the side effects became more pronounced – on 50mg and 100mg I had a dry mouth and light-headedness, but I tolerated it. However on the higher doses I ended up having a nap almost every day. I’d generally be able to manage my work for a while and then the light-headedness/dizziness would become a problem (for which the only solution seemed to be to have a sleep).

If this were helping my OCD it might be worth it, but I haven’t seen any improvement in my OCD symptoms. If anything, my mental health got a little worse as I was more tired and having to put up with unpleasant side effects. The last time I saw my psychiatrist we agreed that I’d go down to 125mg – there was an agreement that we should “exhaust” the option of clomipramine before moving on to trying something else – make sure it definitely isn’t going to start helping with my OCD.

When I went to collect the 25mg tablets the pharmacy didn’t have any in, and I was going away for a week. As a result I decided to go back down to 100mg until the 25mg tablets became available. My rationale for doing that was that although the side effects had been very pronounced, I hadn’t noticed any mental changes, and I had gone up from 100mg to 150mg without taking 125mg in the middle.

In hindsight this seems to have been a big mistake, as after about a week on the lower dose of 100mg I got a relatively sudden onslaught of constant intrusive thoughts on one specific theme. My usual OCD is hard to live with but this was horrific. I felt on the edge of terror much of the time, and kept breaking into tears because I felt like I couldn’t cope with such constant fear. It was like the extreme fear provoked by exposure therapy, but without anything to give rise to the fear or any way to stop the exposure.

I have experienced this sort of thing in the past, but it hasn’t really been unprovoked like this since I was a teenager (I’m 30 now). It felt a bit like the devastation of a teenage heartbreak, but with no apparent cause. Either it was caused by a mixture of things coming together, or the reduction in medication. I am really hoping it was the medication as then it’s easier to know how to respond.

I have tried to get in touch with my psychiatrist but haven’t had a response. I got through to a GP who thought that the reduction from 150mg to 100mg could have been the issue – it is a reduction of 1/3rd after all. The increase hadn’t done anything good, so I didn’t realise that reversing the dose could do anything bad. After speaking to a friend who is a psychiatrist I’ve gone back up to 125mg (I picked up the 25mg tablets from the pharmacy later on).

The past 24 hours I’ve been feeling a little better, but I still feel extremely delicate mentally. I’m scared that the incredible fear will come back and sad at how hard this illness is to cope with. I hope to have some more positive posts for you before too long.

The physical toll of OCD

Last year I was referred for investigations to determine whether there was anything wrong with my heart. This was after the GP found that my pulse was over 100 even though I had been sitting quietly for a while. (In case it’s relevant – I’m not as fit as I’d like to be but I’m not in excessively bad shape.) I went for an ECG and the nurse assured me that there didn’t seem to be anything structurally wrong – no irregular heart beat or other heart-based problem.

What I did notice was that I was able to make my heart rate go down a bit by making a deliberate effort to feel calmer, and to make it go over 100 by thinking about my OCD thoughts. Given that there was nothing physically wrong, I deduced that my heart rate is probably too high because I am always anxious. I’ve since got a Fitbit which records my heart rate and it is indeed often above 100 when I’m not doing anything physically active (just checked now – 100).

It was disappointing to realise that age 29 was the age at which my body could no longer compensate for my OCD. I assumed I’d be a bit older by the time that happened. I also get tired out easily and often have a nap in the day (clearly a theme running through these posts is that I have an understanding boss!) I suspect this exhaustion is partly because of consistently high levels of anxiety and partly because my mind’s internal processing unit is often running the “OCD program” at the same time as the “everyday life programs”.

So there’s another side to OCD that the typical person doesn’t know – how much it affects you physically. I’m also having some difficulty with the physical side effects of the clomipramine today – it’s difficult to eat dry foods and I felt a bit like I had something stuck in my throat this morning. Hopefully this will turn out to have been worth it eventually!

Taking clomipramine for OCD

Clomipramine (Anafranil) is a tricyclic antidepressant – tricyclic antidepressants are an older class of medication compared to the more newfangled [never written that word down before] SSRIs. I believe tricyclic antidepressants are less widely prescribed for mental illness than SSRIs, in part because the side effects are considered more difficult to tolerate. Before prescribing clomipramine my psychiatrist first checked that I had tried an SSRI at maximum dose for a reasonable amount of time (which I had – sertraline at 200mg).

So how is it going? I’ve been on some quantity of clomipramine for about three weeks now. At first nothing happened, but once I was on 100mg I started getting a dry mouth. I wasn’t sure what a dry mouth would feel like as a symptom until I got it. The best way to describe it is to imagine you ran whilst breathing through your mouth (not your nose) – your mouth would get dry. It’s like that but it happens without me doing anything to cause it (I haven’t taken up running with my mouth open). It’s a bit of a hassle, and a surprise, as I have always been quite insensitive to antidepressant side effects compared to reports I’ve heard from others. I have to keep sipping water when I eat foods like bread – every couple of mouthfuls or so. It has become a slight challenge to hold a conversation over a meal, and to chat whilst walking.

I’ve also felt light headed at times, which my psychiatrist said may be due to lower blood pressure linked to the clomipramine (I actually bought a machine to measure blood pressure and it said mine was in the “ideal” range – which may be a lowering as I believe my measurements in the past have generally been “normal” or slightly raised).

I did notice a very slight improvement in my ability to ignore OCD – the frequency of thoughts wasn’t different but OCD’s ability to force me to attend to them was a little reduced. That hasn’t been consistent though – during the past few days OCD has been harder to ignore as I’ve been busy and walking around a lot (walking is difficult with my OCD). So I don’t know if my experience before that was an early sign of the clomipramine helping, or if I just had a day or two when OCD was a little less intrusive for no particular reason.

At the moment the side effects are at an intermediate level: I am perfectly happy to live with them if I see a marked improvement in my OCD symptoms, but if I don’t see any clear improvement then they are too much to put up with in the long term. There’s a possibility that the dry mouth will be temporary, I’ll keep you updated on that!

In a strange way it’s nice to see an antidepressant actually doing something so blatant, as it shows I’m physically responding to it. It’s quite different to when I started on SSRIs (fluoextine/Prozac) – “you’re small so I’ll prescribe a small quantity” – nothing – increase dose multiple times – still nothing, good or bad. I did find a research paper from the 90s that found that having a dry mouth near to the start of treatment with clomipramine was associated with better OCD symptom improvement later on, and a psychiatrist friend told me that in his clinical experience, clomipramine is the medication to be using if you are treating OCD. So I’m cautiously optimistic. The next step is to increase the clomipramine as high as I can tolerate the side effects (within safe limits), then wait about 6 weeks and see if my OCD improves. I’m going up to 150mg tomorrow – keep an eye on this blog to see how it goes.